Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

When to treat

Ask the RN Question:

I was diagnosed with small B-cell CLL 6/2019.  Over the past 18-months I have developed increasing debilitating fatigue, occasional “profound weakness,” and profuse day and night sweats. (I have to change clothes, the sheets, my nightgown every night.)   My blood levels are “indolent,” no value is too far out of range, and IGVG good. I am 13q, unmutated.  Unfortunately, I have had a parade of oncologists at North Hawaii hospital over the past two-years.  One of them, Dr. Tina Passaralis, was very good, and told me that she thought I would never need treatment for my CLL. I had a GI bleed last year (from taking naproxyn for my back pain) and was able to recover my blood levels very quickly after that was treated. She said that was an indication that I did not have bone marrow involvement.

I have had three consultations with Rheumatologists, at University of Washington, Straub in Honolulu, and an osteopath here on the Big Island.  They all say I have no arthritis other than OA in my back – all my pain and fatigue are from something else. I have consulted two separate CLL Specialists, one said he would treat me for my fatigue and other symptoms (Dr. Alexey Danilov) and the other said he would not at this time because my bloods are “indolent” (Dr. Mayzar Shadman).

My oncologists keep telling me it’s from something else.  I have had two very high ANA titer results that no one can explain.  I am working with my doctor on my hypothyroidism and going to start taking Synthroid brand levothyroxine to see if that helps, but my levels have been stable for many years.  I have a very high Thyroid antibody level, which no one can explain.  I have tried an autoimmune diet for months, with no apparent change in my fatigue or weakness.

How would you advise that I proceed in this situation?  I hope for a new, better oncologist, but they haven’t even hired a new one yet.  I have an appointment with the fill-in person in 7/2021.  I also have the option of consulting a hematologist on Honolulu but am just not sure what to do.

Answer: We see that you recently submitted another inquiry about swollen painful lymph nodes, so we will try to address both of those in this email.

When to treat is one of the most common inquiries that we receive. We cover this topic on the CLL Society’s website in this article called “CLL: When to Watch and Wait and When to Start Treatment.”

As for your swollen painful lymph nodes, that is a common symptom of CLL and can also be another indication for it being time to receive treatment. Sometimes steroids can be prescribed to help with swollen painful lymph nodes as well. You can read more about swollen painful nodes and steroids in this article called “Steroids in CLL.”

Your situation is a little unique and it sounds like you have a lot going on. Both Drs. Danilov and Shadman are highly regarded CLL experts. One option might be to request the two of them consult with one another and come up with a final decision together regarding whether or not to begin treatment. Perhaps one of them is unaware of a more recent development in your medical history that might alter their opinions. If that isn’t a viable option, you might consider contacting Dr. Danilov and request that he provide a written recommendation to your primary oncologist in Hawaii, explaining his recommendation to begin treatment as well as what his recommendation would be for a treatment regimen that is best for you. Keep asking questions and pressing for answers!